Missing in mind (and body)

(First of all, apologies for posting this so late. Last week, my husband, little boy and I fell ill and we are all still in recovery mode)

A couple of months ago, a former national level cricketer’s father went missing in Mysore’s Devaraja Market. The local police sprang into action and the gentleman was found in a couple of hours. In that time, though he had wandered some 5 km from the spot he was last seen (the market). News reports quoted the police as saying the elderly gentleman suffered from “age-related forgetfulness”.

Now, I don’t know if the cricketer’s dad has some form of dementia. If he does, I do hope he is getting treatment (medicines can slow the process of brain degeneration but not halt or reverse it). I also hope that his family is alert always whenever they go anywhere. Because the elderly gentleman, if he has dementia, can easily go missing again.

Such wandering is a behaviour associated with dementia. According to the Alzheimer’s Association of the US (www.alz.org), six in 10 people with dementia will wander. More frighteningly, research by the organisation shows that some 50 percent of people who wander “will suffer serious injury or death if they are not found within 24 hours.”

As I wrote in my earlier piece, dementia is not a disease in itself. According to the National Health Service (NHS) of the United Kingdom, dementia is caused by damage in the brain. “The most common causes of dementia are called neurodegenerative diseases, and include Alzheimer’s disease (AD), frontotemporal dementia, and dementia with Lewy bodies. With these diseases, the brain cells degenerate and die more quickly than is part of the normal ageing process. This leads to a decline in a person’s mental and, sometimes, physical abilities. The gradual changes and damage to brain cells are caused by a build-up of abnormal proteins in the brain”.

Lost and found

In my family, we know the dangers of wandering very well because my father has gone missing twice in the past three years. Once on a train journey from Bengaluru back to my home town of Kozhikode in Kerala, he got off at a train station (we later learned it was Palakkad station) and walked away. And on another occasion, he slipped out of my home (in Kozhikode) one early morning, opened the gate (which was unfortunately unlocked) and well, disappeared.

By a miracle, we got him back, both times. That we found him again is entirely due to the kindness and compassion shown by strangers, who took pity on an old man and alerted the police.

Why does my father do this? He is now so disoriented that he believes he must “go to Calicut” (that is what he says). No matter how many times we tell him, “You are in Calicut,” he will not accept or acknowledge that fact. Instead, every day, he asks my mother in Malayalam: “What time is the bus to Calicut.”

And she replies: “Tomorrow morning.”

With that he is happy, for about 10 minutes.

Then he asks the same question again. Every day. More or less, throughout the day. And that is why, given an opportunity (if the gate is unlocked or the front door open), my father is likely to wander off again. Because “going to Calicut” is his only reality.

Why wander?

Resources on dementia have myriad reasons for this wandering behaviour. According to Alzheimer’s Austalia (http://www.fightdementia.org.au), it could be that the person with dementia wanders because they are in a changed environment (a new place of residence). Or they may simply want to escape from a noisy/changed environment. Wandering could be due to short-term memory loss — suppose they set off to a shop or a friend’s house, but forget where they were going or why. Another reason could be that walking is a way of dealing with excess energy, so perhaps he or she needs regular exercise.

Or what if he or she has wandered off in search of someone or something, relating to their past? My father finds it difficult to focus on one thing now, so perhaps for him wandering is a way of keeping occupied. Also, changes in the brain, may cause a feeling of restlessness and anxiety. And this agitation can cause people to pace up and down or wander off, says Alzheimer’s Australia.

Also sometimes, people with dementia often suffer from insomnia, or wake in the early hours and become disoriented. “Poor eyesight or hearing loss may mean shadows or night sounds become confusing and distressing”, the organisation says. And it could even be that, some people leave the house because they believe “they have a job to do. This may be related to a former role such as going to work in the morning or being home for the children in the afternoon,” the organisation adds on it’s website.

Looking for a loved one

So, how will you look for a person who doesn’t remember names, places or people? Who is unable to ask for help, or make other people understand what he (or she) is trying to say? If no stranger stops to help, the dementia sufferer will keep walking, and eventually become dehydrated, hungry and exhausted. Eventually, he or she will be weakened by the exertion. Then there is always the ever-present danger of him or her being knocked down by passing vehicles, and of succumbing to sheer exhaustion.

How can you make sure your loved one is safe? The only way is to ensure that the person with dementia is never left alone. This can mean locking the front door/main gate. It means you must inform your immediate family/neighbours, nearby shopkeepers etc, of his or her tendency to wander so they can all stay alert.

He or she should carry (or wear) some form of identification. My ever-resourceful mother has got some cloth name tags embroidered for my father. She stitches these tags (which say “I am a dementia patient” and gives my father’s name, details of family members, etc.) onto my father’s shirts, especially when they travel. We had a family wedding to attend last year in Mumbai and at both the Kozhikode and Mumbai airports, airport staff were especially helpful. “They came forward, helped us with the luggage, and arranged our transport quickly,” says my mother.

My husband and I also bought an expensive GPS tracking device in the form of a watch for my father. In theory, as long as my father is wearing the smart watch, we can track the location of the watch (by logging in longitude and latitude detals through a given password and ID). We bought the watch from a private security provider in New Delhi. Sadly, the watch is of no use and is of very poor quality. It also requires charging for hours, every day. If charge is low, the device simply switches off.

There are other GPS devices called personal protection devices, in the form of cellphones. But these are actually meant for use by normal, healthy people. A person with dementia will never remember to keep the smart phone on his or her person or even how to use it to call for help.

In other countries, often there exist centralised networks/databanks of dementia patients, that is coordinated with the local police network. Once enrolled in the system, each patient is given a personalised identity kit. So if he or she goes missing, their family can simply alert the network. In India, the voluntary body Alzheimer’s and Related Disorders Society of India (ARDSI) (http://ardsi.org/) does run 24-hour national helplines but I have no idea how efficiently this works.

In Bengaluru, the Nightingales Medical Trust (NMT) which runs the Nightingales Centre for Ageing and Alzheimer’s (NCAA) in Kasturinagar, is reportedly planning to reintroduce a project called ‘Nightingales Trace’ — identification bracelets containing the name/contact details of patients enrolled with the trust. NMT had launched the project in 2010, but met with little success.

The reason is simple: “If a dementia patient wearing the bracelet goes missing, ultimately, a stranger has to stop, check the bracelet and then inform us or his/her family. Else the bracelets are of no use,” a source at NCAA tells me. Apparently, NMT is now reworking the bracelets. If the project works, it will be a wonderful thing. And in fact, families like mine will be interested in purchasing a bracelet too.

Twice we lost my father. Twice we found him, again. Thanks to the kindness of strangers. Maybe there is a higher power, watching over us, after all.